title: A systematic review of health-related quality of life  instruments in patients with cancer cachexia.
abstract: OBJECTIVE
  Assessing the health-related quality of life (HRQOL) of cancer patients with cachexia is particularly important because treatments for cachexia are currently aimed at palliation and treatment efficacy must be measured in ways other than survival. The aim of this systematic review was to evaluate HRQOL assessment in cancer patients with cachexia.
  
  
  METHODS
  Using guidance from the Centre for Reviews and Dissemination, relevant databases were searched from January 1980 to January 2012 with terms relating to cancer, cachexia and HRQOL for papers including adult cancer patients with cachexia or documented weight loss at baseline.
  
  
  RESULTS
  We found one cachexia-specific instrument, the Functional Assessment of Anorexia/Cachexia Therapy, but the tool has not been fully validated, does not cover all the relevant domains and the consensus-based standards for the selection of health status measurement instruments checklist highlighted a number of weaknesses in the methodological quality of the validation study. Sixty-seven studies assessed HRQOL in cachectic or weight-losing cancer patients. Most used generic cancer HRQOL instruments, limiting the amount of useful information they provide. A modified version of the Efficace minimum data checklist demonstrated that the quality of reporting on HRQOL tool use was inadequate in many of the studies. A negative relationship between HRQOL and weight loss was found in 23 of the 27 studies which directly examined this.
  
  
  CONCLUSIONS
  There is a pressing need for a well-designed HRQOL tool for use with this patient group in both clinical trials and clinical practice.
authors.affiliation: Cancer Sciences, University of Southampton, Southampton, UK. S.J.Wheelwright@soton.ac.uk
authors.forename: Sally
authors.initials: S
authors.lastname: Wheelwright
authors.forename: Anne-Sophie
authors.initials: AS
authors.lastname: Darlington
authors.forename: Jane B
authors.initials: JB
authors.lastname: Hopkinson
authors.forename: Deborah
authors.initials: D
authors.lastname: Fitzsimmons
authors.forename: Alice
authors.initials: A
authors.lastname: White
authors.forename: Colin D
authors.initials: CD
authors.lastname: Johnson
mesh_terms: D000855:Anorexia / Q000188:drug therapy / Q000209:etiology*; D002100:Cachexia / Q000188:drug therapy / Q000209:etiology*; D006304:Health Status; D006801:Humans; D009369:Neoplasms / Q000150:complications* / Q000523:psychology; D011788:Quality of Life; D016896:Treatment Outcome